hey all…thought I would update you… the neuro I saw. few weeks ago is still deliberating re review etc. yesterday I saw a neurosurgeon and had some surprising news about what he thinks is wrong…it’s doesn’t cover all my symptoms but if MRI confirms its positive news. He suspects that I have tethered cord syndrome which was not symptomatic until I had an rta at the age of 24. despite an MRI back then that showed spina bifida acculta, no one thought to consider TCS. but it’s fits with my onset of symptoms post rta…the spinal cord is literally tethered at the base of thorasic spine…and trauma can cause it to become symptomatic, leg probs,walking, balance, bladder probs and sometimes bowel probs. plus I had two further whiplash injuries in 97 and 98 and not long after had retention of urine, a classic symptom…again it was missed so he is ordering a mriof thorasic and lumber spine. so if thisis confirmed that’s good. he said it doesn’t explain all of my symptoms …my currents shoulder/ arm probs which have got allot worse in last two weeks…waiting fora referal to orthopaedic triage for further assessment after physio and injections have not helped. he notesd poor left hand. to nose co ordination , relief exes are not normal etc…so really the neuro.needs to look into other symptoms I have had,the neck probs ON , etc…the list goes on…if nothing else nasty shows up on MRI then it’s rehab physio…eek…just hope they know what they are doing re leg and back and postural probs from wrong height stick…I’ll give it a go…but he doesn’t think I should be in the wheelchair long term and bad advice from ot and physio in past he thinks was the wrong road…but my mobility was so bad I couldn’t get far at all…still that’s then…alas surgery can be done for TCS but reluctant to do it in adults…although back in 94 it could have been done as I was still young…lol that would have limited disability, neurological dysfunction. etc… just thought I would post so others may know of this condition if in limbo land. em x
eyes update… well I went to optitions yesterday…still borderline re driving. so I will get new contact lenses and see if I can read a number plate from 20 metres with at least one eye then should be fine to drive… my left rye which I had ON in is improving slowly and the odd thing is my right eyesight also deteriorated during ON even though it wasn’t in that eye also. no one can explain this…no sign of cataracts and my glaucoma is not advanced enough to cause this either. my right eye tracking is very odd when neuro looked at eyes, my right eye will track so far then go back the other way,then continue again…it’s most odd…my left eye is still lazy since ON and hope the new lenses will help it become less so, before On my right eye was lazy all the time…now that ones taken over as dominant one. I have never had binocular vision since childhood. so will have to see. excuse the pun…will hold off on new glasses for now as can’t afford to keep changing as my visual acuity will improve more over time. my left eye seemed to take ages on the sight test…and the oscillopsia doesn’t help either…this is still present in both eyes…and is worse when I am trying to focus on something…but it’s there all the time. my dry eyes are no longer dry…so the drops are helping. light sensitivity Is still there and both eyes were watering after exam with light…but again improved since I changed the glaucoma drops to preservative free as they really were exacerbating the eyes . em
Hi Em.
Glad you’re getting some progress on a diagnosis. Can’t see how ON fits with a spinal cord problem but, as you say, there must be more than one thing going on.
I know that rehab physio can be miraculous - so fingers crossed they can help you loads (can you ask for a referral no matter what the MRI shows?).
Karen x
hey Karen thanks for your reply… yes I agree the spinal cord tethering is at bottom of. thorasic spine…and affects the legs / hips, knee and foot usually and bladder/ bowel. true I think there probably is and said it doesnt explain everything and the neurosurgeon said they want to see there are not any other nasty surprises. on MRI Neuro is still a bit quiet…lol but hopefully he will see the MRI results also and take it from there…think he is being cautious re past mega mistakes/ misdiagnosis and wants to get it right so I get the right dx and treatment…would be good if both neuro and neurosurgeon could speak to each other too…in same dept , same hospital after all. yes looks like rehab physio will be on the cards whatever the results…but have made it clear it needs to be a neuro physio and one who knows what they are doing, and takes into account hx and MRI results,symptoms and can help me achieve realistic goals… my prev exp is not good at all (97)and I ended. up coming out after 12 wks much worse off than before I went in… but accept things have changed allot since then…so am happy to give it another go and I think the yoga and core strength / cardio stuff I have been doing at home will help… em x
I’m sure it will be better this time. Core strength stuff is really popular, but for a good reason - it’s REALLY important! More of us should be following your lead 
Kx
aww thanks Hun…am positive about it…and want to get the best out of it that I can. the hospital has agood reputation for rehab so that’s a good start. thanks Hun…it’s not easy at times but I feel better after for doing it…the muscle shaking is much worse but I just pace myself and don’t over do it…otherwise vertigo kicks in also…lol I find two shorter workouts better one in morning and one at tea time…and I do what’s can on the day ie upper or lower body …shoulder is making things hard and so not doing that side but can do other stuff…so all good… well if someone with my disabilities can do it so can others…often people say on the park when I am walking my dogs on the trike…they think I am amazing…but I have dogs and enjoy it…it’s gets me out…and they are a motivation for me…so it works both ways…lol hope you’re having a good weekend after your fabtrip away… e, x